A forum for family, friends and carers of pancreatic cancer patients

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
Posts: 2
Joined: Tue Sep 17, 2019 3:18 pm

Recent diagnosis

Postby Alison1972 » Tue Sep 17, 2019 4:25 pm

My husband had suffered from weight loss, stomach pain and several other symptoms since last year. GP continually prescribing ant acids and telling him loosing weight was a good thing. Went back in November 18 and spoke to a locom doctor who finally sent him to a consultant under the two week rule. Consultant ordered a camera down and a ultrasound. Both clear and consultant discharged him back to GP stating, this gentleman isn’t for me. Symptoms continued and after seeing 2 further GP’s in the practice another consultant appointment was ordered January 19, but this time not on the two week rule, just a bog standard appointment. After 5 separate appointments were cancelled with 4 separate consultants, we finally saw a consultant 26th May. CT scan was ordered and on 18th June we were given the devastated news that it was locally advanced pancreatic cancer. We are currently going through chemotherapy, praying the tumour shrinks enough for surgery. He is currently on his 4th cycle out of 6 of FOLFIRINOX and have his appointment for his CT scan on 2nd October. I am reading is very little positivity. Is there anyone out there who had managed to get to surgery? We are absolutely devastated. He has lost so much weight but has very little pain, just the usual effects of the chemo and fatigue. He has such a positive attitude, he is so brave. I’m terrified of loosing him our children are only 20 and 23. It’s devastating. I’m so angry this wasn’t picked up sooner. We may have had a better change if the hospital had discovered it 6 months earlier.

Posts: 12
Joined: Wed Feb 20, 2019 9:23 pm

Re: Recent diagnosis

Postby Borobi » Tue Sep 17, 2019 7:16 pm

Hi Alison1972

Welcome to the club that no-one wants to join. There was a recent post on here - I think it might have been a response to another post- from a woman who was 5 years post surgery. So some people do get there.

You’re in the same boat as me I’m afraid. My husband had an abnormal scan on New Year’s Eve and was finally diagnosed in Feb. Locally advanced so surgery not an option then. He’s had 12 cycles of Folfirinox since and his post treatment scan showed the tumour had shrunk by half. We’re waiting for the MDT to decide if they can offer surgery (which still seems unlikely) or it’ll probably be radiotherapy with or without more chemo.

I’m hoping we get a bit of a break from treatment at some point so we can have a holiday. Chemo just takes over your whole life.

He’s had a pretty good reaction to the chemo, but he’s got peripheral neuropathy which seems to be very slow to go. He’s now 3 weeks post chemo. He’s getting his taste back which is good.

I hope that your husband has a good reaction to the chemo and you’re receiving good care from the hospital. The nurses on here are very helpful if you contact them and can outline likely scenarios. But if you want to ask anything from someone in the same boat, just fire away.

Very best wishes.

Posts: 2
Joined: Tue Sep 17, 2019 3:18 pm

Re: Recent diagnosis

Postby Alison1972 » Tue Sep 17, 2019 7:30 pm

Thank you Borobi, I wish you all the best too. X

PCUK Nurse Jeni
Posts: 1101
Joined: Mon Jun 14, 2010 1:30 pm

Re: Recent diagnosis

Postby PCUK Nurse Jeni » Thu Sep 19, 2019 9:48 am

Hello Alison1972,

Thank you for your post on the forums, and I am sorry to hear that your husband has had a diagnosis of pancreatic cancer. And especially in the manner that it was discovered - it is not surprising that you feel upset that it was not picked up the first time around.

Can I ask, with regards to the weight loss, has he seen a specialist dietitian at all?

And has he been taking pancreatic enzymes, such as creon?

Please do email us on the email address below and we can provide more information around this - its a bit too much to post on a forum site.

Kind regards,


Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Starheart 10
Posts: 1
Joined: Sat Sep 28, 2019 7:58 pm

Re: Recent diagnosis

Postby Starheart 10 » Mon Sep 30, 2019 11:34 am

I am so sorry for what you are going through. Can I ask , did you challenge how the cancer was missed at ultrasound ?? It’s quite shocking this can happen. Obviously your priority is focusing on treatments So I’m sending you the best of luck.

PCUK Nurse Nicola
Posts: 21
Joined: Tue Sep 04, 2018 9:40 am

Re: Recent diagnosis

Postby PCUK Nurse Nicola » Fri Oct 04, 2019 10:22 am

Hi Starheart,
Nicci here, one of the nurses that works on the support line. Thanks for your post.
Starheart, ultrasound scans are often used in the early stages of investigations and it is an effective way to pick up on lots of different conditions. However it can be difficult to see the pancreas on an ultrasound scan as often the area isn’t able to be visualised on the scan due to bowel gas. A CT scan gives a much clearer picture of the pancreas.
Always here to answer any questions you may have, our support line is open Mon- Fri 10am-4pm 0808 801 0707.
Kind Regards,


Nicci Murphy
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707